The Alberta MS Society says "We are sorry"

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

election time for Canadians..........

Postby tiredloulou » Mon Mar 28, 2011 3:17 pm

definitely you know the math into this time of elections, Pattycakes

..... it is now our time to vote and support our cause

the handling of ccsvi with our m.s. society was the most unprofessional
move they have made in our time era.........
their lost of funds from msers / family/ friends
to give no respect in listening to our needs and wants
our voices who make up the m.s. society....

bring your votes to the table on the candiates that support our cause
and we actually did hear their voice .........

this is our chance , excercise your rights
time to clean house.....
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Postby fogdweller » Mon Mar 28, 2011 3:25 pm

Blaze wrote:Fodweller, it was a lot more than that! MS Canada served on the CIHR "expert panel" which unanimously recommended against doing clinical trials. MSS snubbed experts like Drs. Haake, McDonald in granting funds for research. Instead, they pandered to Dr. "Hoax" Freedman and others.

They ignored information about CCSVI until CTV broke the story. They only granted funds for research after an outcry for people with MS--and then just for imaging.

Now, they are saying they are sorry?!? Follow the $$$. It's drying up and they're running scared.

MS Canada could show they are truly interested by funding randomized double blind clinical trials proposed by Dr. Sandy McDonald, the only Canadian physician to have trained with Dr. Zamboni. Until they do that, my donation money goes elsewhere.


Absolutely reasonable. Send YOUR money where YOU think it will do the most good. (I personally agree with supporting CCSVI and urging others to do so as well) Hwever that does not mean that those who disagre should be castigated as evil and dedicated to unnecessary deaths.
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Postby 1eye » Mon Mar 28, 2011 4:26 pm

I'm sorry to have to keep mentioning this, but people are dying. To make it personal, consider that damage in 'MS'/CCSVI causes death. The problem with Enlightened Skepticism and being small-c conservative and not blithely jumping into the handiest bandwagon and all these reasons for inaction, is that cells, and from there bodily functions, and from there, whole people, are dying. Neurologists and Society execs sulk and complain about a lot of theoretical trash, obstruct, delay, and confound.

If anybody is really interested in saving the lives of these people, there is certainly enough evidence for a program of compassionate intervention. If we make this possible, in hospitals throughout Canada, with legitimate interventionalists and surgeons, performing a known, relatively simple procedure, costing the same as routine angioplasties that are done every day in this country, these people's lives can potentially be saved. Why just let them die?

Why not enroll all these compassionate interventions in a clinical trial and collect information on their progress? If we did at least this much, in hospitals across the country, we might even be able to learn something in the process.

Instead, a doctor threatening to save a life is threatened with loss of his license. The CIHR says there is not enough evidence. We have developed plenty of procedures, with no evidence,when people's lives are at stake. My brother had a shunt put in his head and neck, into his jugular, when he was only a day or two old, in a surgery that had not been done at all before. It saved his life, in 1964. Now he is a successful executive.

This CCSVI procedure is known to be safe and effective in most cases. If I were dying, I would sign any waiver or consent form I could, to have my life spared. Even if there were less than the evidence from Dr. Zamboni's first trial. Are we afraid these people might live, from placebo alone, and thus be illegitimately saved without scientific proof?

While we waffle and complain about evidence, why are we unwilling to go beyond peer-reviewed papers in a tiny subset of journals to assess evidence? To use the telephone? To visit a few places, and see what is being done?

It is a turf war, plain and simple, and a contest of wills where human lives are easily discarded, like so many pithed mice. The MS Society of Canada has chosen which side to be on in this turf war. People whose lives are at stake count for nothing. They are used to it. Doing nothing is easy.

So why would anyone who disagrees with this approach and wants to help these people want to support the MS Society?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby fogdweller » Tue Mar 29, 2011 2:24 pm

I agree with compassionate use exception where the patient is in danger of sufferin death. And I know there are MS cases in this catagory, and CCSVI angioplasty should be made available to them. (I am not sure it would not be.)

The difficulty for the professional is that while compassionate use if available when a death is otherwise imnmanent, in the vast majority of MS cases cells while are at risk, the patient is in danger of getting worse, not dead. Waiting to make the procedure generally available is not killing people.

It is not an easy call for places like Canada where the only real medical care available is publically provided care, and the decision whether to provide this service is a political decision. (I am in the U.S. and just dug into my pocket and had the procedure done.) In MS there is no good alternative treatment. The angioplasty is not very dangerous as medical procedures go. So it is reasonable and as far a most of the people on ths site are concerned, justified to make the treatment available. I just do not agree that those that have a different opinion are callously throuwing away lives in pursuit of a turf battle.
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Postby thornyrose76 » Tue Mar 29, 2011 2:29 pm

I sure would rather be stateside! :wink:
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Postby 1eye » Wed Mar 30, 2011 12:34 pm

I just do not agree that those that have a different opinion are callously throwing away lives in pursuit of a turf battle.


Yes, until they die, most people are probably unaware that they are about to lose someone. After they are gone, it is too late for the survivors to change their minds.

MS Societies send out obituaries all the time. They know this is killing people. Doctors know more than they want to, about how long you've got. 'How many deaths will take till he knows?'

How would you describe it, if not in those terms? It's not just the opinion, it's what lengths people are willing to go to, to avoid a different opinion, even if it means 'a few' deaths might happen.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby facetspera » Thu Mar 31, 2011 3:52 pm

Back to the "apology" how interesting that the society apologizes for putting attention on research rather than considering the emotional issues. That is such a politician position- the un-apology.

To me this is just a stratedy to address concerns over the decline in financial support for the society. A press release is full or words, the actions show the true way the society will treat CCSVI.
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Postby Cece » Thu Mar 31, 2011 4:46 pm

facetspera wrote:Back to the "apology" how interesting that the society apologizes for putting attention on research rather than considering the emotional issues. That is such a politician position- the un-apology.

Yes! That bothered me too, I just couldn't put my finger on it.
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Postby frodo » Thu Mar 31, 2011 4:47 pm

facetspera wrote:Back to the "apology" how interesting that the society apologizes for putting attention on research rather than considering the emotional issues. That is such a politician position- the un-apology.

To me this is just a stratedy to address concerns over the decline in financial support for the society. A press release is full or words, the actions show the true way the society will treat CCSVI.


I suppose they just cannot say "we apologize for killing some of you...". Though in fact is what they did.

I hope they will have at least some problems sleeping.
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Postby Lyon » Thu Mar 31, 2011 4:56 pm

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Postby HappyPoet » Thu Mar 31, 2011 7:35 pm

frodo wrote:I suppose they just cannot say "we apologize for killing some of you...". Though in fact is what they did.

I hope they will have at least some problems sleeping.

Frodo,
It is unconscionable how the Canadian MS establishment allowed Mahir Mostic to die in Costa Rica because he was denied follow-up care at home in Canada.

I, too, hope they will have at least some problems sleeping.
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Postby Lyon » Thu Mar 31, 2011 7:45 pm

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Postby HappyPoet » Thu Mar 31, 2011 7:58 pm

Lyon wrote:
HappyPoet wrote: It is unconscionable how the Canadian MS establishment allowed Mahir Mostic to die in Costa Rica because he was denied follow-up care at home in Canada.

I, too, hope they will have at least some problems sleeping.
And just how is the The Alberta MS Society responsible for that?

How is the Alberta MS Society not responsible for his death?
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Postby jomac7 » Thu Mar 31, 2011 7:58 pm

And just how is the The Alberta MS Society responsible for that?[/quote]


Or any MS Society?????
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Postby Lyon » Thu Mar 31, 2011 8:04 pm

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